Some Voices from the the International ME Community

The NICE Document :

Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) in adults and children

DRAFT FOR CONSULTATION

Some voices from the the international ME community

Greg Crowhurst Oct 8th 2006

CHAPTER ONE : Introduction to Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) p. 35

• The term myalgic encephalomyelitis (means muscle pain, my-algic, with inflammation of the brain and spinal cord, encephalo-myel- itis, brain spinal cord inflammation) was first coined by Ramsay and Richardson and has been included by the World Health Organisation (WHO) in their International Classification of Diseases (ICD), since 1969. The currently version ICD-10 lists ME under G.93.3 - neurological conditions. It cannot be emphasised too strongly that this recognition emerged from meticulous clinical observation and examination (Hooper 2006)[1]
• Bassett (2005[2]) explains : “ Myalgic Encephalomyelitis is a loss of the ability of the Central Nervous System (the brain) to adequately receive, interpret, store and recover information which enables it to control vital body functions (cognitive, hormonal, cardiovascular, autonomic and sensory nerve communication, digestive, visual auditory balance etc). It is a loss of normal internal homeostasis. The individual can no longer function systemically within normal limits….. Confirmation of this hypothesis is supported by electrical tests of muscle and of brain function (including the subsequent development of PET and SPECT scans) and by biochemical and hormonal assays. Newer scientific evidence is increasingly strengthening this hypothesis.”

• Undoubtedly the perverse use of chronic fatigue syndrome, to impose a psychiatric definition for ME/CFS by allying it to fatigue syndromes, has delayed research, the discovery of effective treatment(s), and care and support for those suffering from this illness ..... the use of CFS should now be abandoned and that, following the Minister of Health’s assurances, the WHO definition is now accepted and used in all official documentations. (Hooper 2006)

• In the UK, patients with myalgic encephalomyelitis (ME, also known as Chronic Fatigue Syndrome or CFS), particularly children, have suffered gross and barbaric abuse and persistent denigration as a consequence of the beliefs of certain psychiatrists who are attempting to control the national agenda for this complex and severe neuro-immunological disorder. These psychiatrists are shown to be clearly in breach of the first tenet of medicine --- first do no harm--- in that by their words and deeds they have wreaked havoc in the lives of ME/ICD-CFS patients and their families by their arrogant pursuit of a psychiatric construct of the disorder which ignores the abundant clinical and scientific evidence (widely presented in the international medical and scientific literature) of the organic nature of ME/ICD-CFS To the serious disadvantage of patients, these psychiatrists have propagated untruths and falsehoods about the disorder to the medical, legal, insurance and media communities, as well as to Government Ministers and to Members of Parliament, resulting in the withdrawal and erosion of both social and financial support. As a consequence, Government funding into the biomedical aspects of the disorder is non-existent This coterie of psychiatrists has proven affiliations with corporate industry and has insidiously infiltrated all the major institutions, directing funding for research into an exclusively psychiatric model of the disorder, focusing on "management strategies" involving psychiatric techniques, even though such techniques have been shown to be at best of no lasting value and at worst to be harmful to patients with ME/ICD-CFS. (Hooper 2003[3])
• Today UK mainstream medicine, ignoring the mountain of biomedical evidence to the contrary, seems to subscribe to the Three Myths that (25%Group submission to the Gibson Inquiry) :

• ME/CFS and Chronic Fatigue are not the same. ME is formally classified as a neurological disorder in the International Classification of Diseases (ICD10:G 93.3; WHO 1992), and the ICD separately classifies fatigue syndromes as a behavioural (psychiatric) disorder (ICD 10:F 48) As Carruthers & van de Sande (2005)[4] point out : “ Chronic fatigue must not be confused with ME/CFS because the ‘fatigue’ of ME/ CFS represents pathophysiological exhaustion and is only one of many symptoms.

• There is a significant body of compelling published evidence, demonstrating the involvement of the central nervous system, the autonomic nervous system and the peripheral nervous system in the pathogenesis of ME/CFS, as well as immunological and vascular disruption.

• Professor Anthony Pinching.. is famous for his on-the-record comment in 2000 at the CMO’s Working Group Adult Sounding Board event that there is no need for research into ME/CFS before treating people who suffer from it, saying: “Our worries about names, causation, mechanisms, OK, are fun”; (2) the well-publicised beliefs of members of the Wessely School and (3) the officially recorded view of Professor Colin Blakemore (Chief Executive of the Medical Research Council) which he presented to the All Party Parliamentary Group on ME on 26th April 2006 at the House of Commons, all of whom advise that “illnesses” can be treated without knowing the causes and that there is no need to look for the cause of ME/CFS:
• There is an extensive intellectual foundation for the biological approach to investigating these complex and challenging syndromes of uncertain origin. In contrast, the alternative and controversial claims of some psychiatrists that all these syndromes are expressions of somatisation or covered by the biopsychosocial (BPS) theory lack any sound intellectual basis . (Hooper 2006)

• As consultant physician Dr William Weir said to the Gibson Inquiry at the fourth Oral Evidence session on 10th July 2006: there is a long history of the biopsychosocial (BPS) model of disease being discarded once the evidence is obtained that disproves it. Dr Weir emphasised that the BPS model is a default philosophical posture which some people embrace when they do not know what is going on or do not understand the science. He pointed out that in the 1980s, the BPS model was claimed to be the cause of AIDS until virologists found the virus….. the evidence continues to mount that the BPS model for ME/CFS is untenable. As Professor Malcolm Hooper noted after attending the first Oral Evidence session on 18th April 2006: “The psychiatric theories of ME, under whatever name, are dead. They have been exposed as flawed and invalid. They must be abandoned forthwith”. (Marshall & Williams 2006, For the Attention of the Gibson Enquiry).

• The current most widely used definition of CFS is that formulated by the Centres for Disease Control (CDC) in 1994. This definition lacks clarity and mentions few clinical signs. The CDC 1994 definition is one of exclusion and delay with a confusing emphasis on fatigue. (Hooper 2006)

• The 1991 Oxford criteria, have never been used or adopted by anyone, except WesselySchool adherents and which by definition should exclude those with ME . (Jones 2006)[5]

• Where the one essential characteristic of ME is acquired CNS dysfunction, that of CFS is primarily chronic fatigue. By assumption, this CFS fatigue can be acquired abruptly or gradually. Secondary symptoms and signs were then added to this primary fatigue anomaly. None of these secondary symptoms is individually essential for the definition and few are scientifically testable. (Hyde 2003)[6]

• The CFS definitions have another curiosity. If in any CFS patient, any major organ or system injury or disease is discovered, the patient is removed from the definition. The CFS definitions were written in such a manner that CFS becomes like a desert mirage: The closer you approach, the faster it disappears and the moreproblematic it becomes. (Hyde 2003)

• The initial CDC case definition for CFS suggested as a physical criterion, "Palpable or tender cervical and axillary lymph nodes" (Holmes et al., 1988). Few of the signatories of that definitional paper were actually clinicians who had ever seen any ME/CFS patients on a regular basis. The Oxford Group corrected that and simply stated, "There are no clinical signs characteristic of the condition" (Hyde 2003)

• The Oxford case definition (Sharpe et al, 1991) excludes those with neurological disorders. Indeed, this was confirmed in 1991 by psychiatrist Anthony David, who referred to the Oxford criteria shortly after they were published:“British investigators have put forward an alternative, less strict, operational definition which is essentially chronic fatigue in the absence of neurological signs (but) with psychiatric symptoms as common associated features” (David, 1991[7]).” (Kennedey A Bryant J 2005[8])

• These (new CFS/ME) centres are discredited because they employ cognitive behavioural therapy (CBT) and graded exercise therapy (GET) when there is significant publicly available evidence that such regimes may be actively harmful to those with ME / CFS because they are based on the psychiatrists’ discredited assertion that “CFS/ME” is a “faulty belief system” that can be “corrected” by CBT and incremental aerobic exercise regimes.(Williams 2004[9] )

• Stephen Ralph (2006[10]) points out : “80% figure of individuals do not present to these “Fatigue” Clinics with the specific signs and symptoms of G93.3 Myalgic … The vast majority of "CFS/ME" patients are almost certainly seen by intentionally vague (but to the ignorant impressively sounding) “multidisciplinary teams” at "Fatigue" clinics set up using the Functional Psycho-Somatoform Disorder model and an ideology handed down to them by their puppet masters in the form of Wessely/Sharpe/White/Chalder et al. As we have already seen here on MEActionUK - the majority of these clinics have people running them who do what they do based on their interests in Somatoform Psychiatry even if they are not psychiatrists themselves. …The vast majority will be treated as though they have mental health disorders of which fatigue and non-specific pain are key treatable symptom using CBT and Graded Exercise Therapy.”

CHAPTER 2 Methodology (P.38)

• As a summary of evidence-based medicine for the treatment of Chronic Fatigue Syndrome, Section 3 of this systematic (York) review from Bagnall et al. is a failure...The reviewers have (1) failed to realise the limitations of the RCT (randomised controlled trials) evidence base, (2) failed to integrate the great body of literature on individual clinical expertise, and (3) failed to fully reflect the rights, preferences and choices of the patient community. (Hooper & Reid 2006)[11]

CHAPTER 3 The experience of people with CFS/ME (P.55)

• .Simon Lawrence states : “To date, all patient reporting compiled by the ME charities has clearly shown that these therapies have been unhelpful or even caused harm in a significant number of sufferers. This is true for ME patients right across the spectrum of the disease. Indeed, from one of our own surveys, entitled Severely Affected Analysis Report, compiled in March 2004, it was found that, "…of the 39% of our members who had actually used Graded Exercise Therapy, a shocking 82% reported that their condition was made worse by this treatment. On the basis of our members' experiences we question whether GET is an appropriate approach for patients with ME. It is worth noting that some patients were not severely affected before trying GET. Thus, it is not only people with severe ME who may be adversely affected by this form of treatment."Also further findings from the Report referred to above showed that a massive 95% of our members found GET to be an unhelpful form of treatment for their condition and similar figures were noted for CBT, with a massive 93% who found this form of treatment unhelpful for their condition. We therefore question why these forms of treatment are still being considered as suitable for ME patients.”

• Our latest research (25% Group Dec 2005) paints a bleak and often horrifying picture, for a seemingly all-powerful, multi-million-pound-funded UK school of psychiatrists, determined for whatever political or commercial agenda , to make ME a mental health issue, continues to wield its wildly inappropriate influence . Just how powerful that psychiatric lobby’s influence is and the impact it is having on real lives, is illustrated by the following examples :

• a medical team recently informed one severely ill sufferer that ME/CFS is a “sort of phobia”

• a sufferer was told by their “ NHS acupuncturist “ that “ ME/CFS patients .. are not really ill. “

• a sufferer reports being “subjected to derision and dismissal with repeated accusations of ‘anxiety and depression’”

• another sufferer states that “My GP’s practise seems to have the opinion that ME is nothing, and that it is related to depression, and that if you are in bed, then you have “given in”;

• one of our members “arrived at A&E … when they took my medical history and discovered that I had ME they were reluctant to investigate into my new symptoms and on my medical notes they documented that I was psychosomatic and anxious and they kept sending me home and telling me to live with it. By my final admission into hospital my MP had forwarded my complaint to the PCT and proper investigations commenced in which it was discovered that I had a large amount of Gallstones in my Gallbladder, but despite the results of the ultrasound they were still saying that the new symptoms that I was suffering with were unrelated to the Gallstones and that it was my ME and irritable bowel syndrome. My MP carried on fighting for my case and in December 2004 the hospital finally surgically removed my Gallbladder which resolved the problem. In January 2005 I obtained a copy of my histology report on my Gallbladder which revealed that my Gallbladder was in a very bad way and chronically inflamed and compacted with Gallstones.

• A sufferer sums up the situation : “If the psychiatrists continue to influence research and funding into ME we will never receive appropriate treatment or recognition for the severity of the illness. The many biomedical discoveries into abnormalities in ME patients are ignored by psychiatrists who inform the world (including our GPs and all medical staff we come into contact with) that we are suffering from a somatisation disorder…If the government continues to be informed about ME by a wholly inappropriate sector of the medical profession then many thousands of severely ill people will continue to be seriously ill and not taken seriously.”(25 %Group 2005)

• All nurses I have encountered, bar one whose daughter had ME, have treated me with contempt, lack of understanding and actual neglect during a hospital stay as they had “far worse off patients than you” to care for.

• Even now, after engaging in another battle with the local health authority because I was confronted with a doctor (previously) who would not even discuss a report with me which had been produced and provided by the ME Specialist I saw, I feel the new doctor, at times, is merely paying lip service to the fact I got put on his list via the local health authority, rather than by his choice. This, lately, has caused him to develop an “attitude” with me and I keep biting my tongue when confronted with such an attitude. Not only is it appalling behaviour but I believe he is trying to see how far he can push me and then he can feel justified in saying to the local PCT he wants me to be removed from his surgery list.

• When I was first ill (8 years ago) my condition started to improve a little and my GP suggested I get back to exercising. It wasn’t really graded exercise – he said I should “get on my bike and get my heart pumping again.” I did this along with some aerobic exercise thinking this would get my fitness back. I then became severely affected and have been for the past 8 years – whether this was because of the exercise I don’t know.

• A hospital psychiatrist put in my notes that she suspected anorexia as I was very underweight - my inability to chew solid food due to muscle weakness and oesophageal spasms were classed as anxiety related. If they had been classed as the physical problems they were, I would have been put on a high protein liquid diet (or even been tube fed which would have been a Godsend) and given muscle relaxants to stop the spasms – both of which would have been invaluable. Once I was back home, my GP prescribed the muscle relaxants I needed (at my request) and I easily gained weight on store bought high protein shakes. Yet the anorexia notes are still in my hospital file and place a stigma on me which colours any future dealings with hospital medical staff, despite me proving that anorexia was not the issue – a physical difficulty was, and despite an earlier psychiatric report which stated I had no behavioural problems. No matter what evidence to the contrary, the psychiatric label prevails.

• I have been shut in an AIDS ward for 7 weeks and the staff have been told to ‘’Limit Patient contact’’ and ‘’Write down everything he says’’ despite being mentally sound, and never sectioned. This was in an Immunological ward. Astonishing that this should happen in the NHS after so much is known about M.E

• My GP’s practice seems to have the opinion that ME is nothing, and that it is related to depression, and that if you are in bed, then you have “given in”. When I have tried to explain to my GP how ill I feel, or try to explain different symptoms, I feel I am not believed or that I am exaggerating…A family member asked me about my illness, and when I tried to explain what I was feeling, and how difficult it made my life, she dismissed every thing I said, and ended the conversation by saying that I “should be locked up. And that I was not fit to be out, and I should be locked in the Psychiatric unit immediately”

• My GP gave me a leaflet his practice had received from Simon Wessley’s unit at KingsCollegeHospital in London. I read it and said that the condition it described had no similarities to what I was experiencing. He suggested I go for an initial assessment anyway which I did – at great cost to my health. On arrival I was horrified to find that the ‘CFS’ unit was in the psychiatric department KCH and at that time, security doors protected it. I was also concerned that I was attending a ‘CFS’ unit since this label did not describe my complaint. It came as a shock to be seen by a psychiatrist who displayed little or no understanding of what I told him. My symptoms, most of which are included in the Canadian Criteria, were dismissed or ignored. At the end of the consultation he suggested a course of CBT and said I should take up exercise and get some hobbies. Six months later I was called for a course of CBT which I declined. The therapist became aggressive and defensive when I explained why.

CHAPTER 4 General principles of care (p. 77)